activity or movement designed to effect fundamental changes in the socioeconomic situation

a fundamental change in the way of thinking about or visualizing something: a change of paradigm * the Copernican revolution

a changeover in use or preference especially in technology *the computer revolution *the foreign car revolution

One of the things that Victor said was that reformers are important, but healthcare is not designed for health and wellness, care and kindness. The entrenched forces will not fundamentally change with reform. It needs a revolution, a patient revolution. I’ve never been good at putting other people’s labels on myself – I don’t know if I’m a reformer or a revolutionary. During my professional and now activist career, I’ve seen myself as a catalyst for change – sustainable change that continues when you’re gone.

My revolutionary heroes include: Mary Wollstonecraft (sparked the change to allow women to have the right to full participation in society), Mahatma Gandhi (the power of nonviolence and forgiveness), Oliver Cromwell (translating the Bible into English so lay people could read it), Florence Nightingale (invented nursing and used statistical analysis to improve care), Albert Einstein (the theory of relativity changed how we think of time and space), and Rachel Carson (sparked the global environmental movement).

With some revolutions, there’s no going back. Anesthesia isn’t going away. Neither are elevators. Every revolution has unintended consequences affecting some people badly, even lethally. Anesthesia can cause harm. So can elevators, asynchronous communication, and synthetic opioids. Legislation can be undermined or rescinded. Almost anything can be co-opted and diluted. Most revolutions are never-ending projects requiring constant vigilance and advocacy.

In my narrow world frame, I look for the magic levers of best health. What small things make an outsized difference? Obviously, drink clean water, eat just enough, don’t smoke, get plenty of rest, do meaningful work are magic levers. Maybe the revolutions are magic levers, too.

The revolutions that I’ve hitched to are:

People at the center of care sitting at the tables of governance, design, operations, and learning for research, policy, payment, technology, and care delivery.

People and relationships at the center of care making decisions together for best health.

Healthcare as a right with universal access.

Note: people at the center of care are patients, direct care clinicians, and the people that support them.

I like to try to predict future revolutions, although my track record of predictions is terrible (I was never going to get married or have kids. I was going to keep my last real job until I was 70 and then I’d retire). The thing about revolutions is that they’re crazy difficult to predict and harder to consciously engineer. I’m old now. I don’t want to run anything anymore. I’m happy to follow revolutionary leaders who are charismatic, kind, caring, and persistent. I can be a thought leader, a writer, and a solid team member. So, I am not the revolutionary.

I’ve told my teams over the years, if we don’t fail several times a week we’re not pushing the envelope and not doing our jobs. We weren’t tightrope walkers, pushing IV meds, or manufacturing artificial joints. We were innovators, learners, and leaders. Failure as a virtue is a hard sell – to almost anyone. My teams, my colleagues in leadership, editorial review boards always start by thinking I’m crazy. Sometimes they eventually get it, sometimes not. Leadership usually wants to get A’s. In one health system I worked for, I reported that we successfully completed medication reconciliation in 40% of admissions. OMG, that’s awful! They said. No, I said, that’s great! We’re failing. Let’s succeed. In 18 months we completed medication reconciliation 70% of the time. It’s a lot harder to go from 70% to 80% than 40% to 70%. In research, we don’t publish when the study doesn’t prove the hypothesis. Yet, not proving is as important, if not more important, than proving. I was on an Editorial Review Board once that decided to solicit articles where the hypothesis wasn’t proven and something was learned. Over a 10-year span, we solicited exactly 0 such articles. Zero!

A definition of failure to some is the opposite of success. Not necessarily. Especially when it comes to learning and getting healthier. We don’t tell kids they fail when they fall learning to walk. They keep trying. Same with learning to talk. As an adult, I find failure a motivator to try again. As a thinker and a catalyst for change, I’m delighted when I succeed with 30% of what I try. It’s been the rare boss that’s accepted that. They’ve been the best bosses and we’ve done the best work together in my career.

For health, embrace failure. I did eye exercises twice a day for 8 months before my brain rewired and my crippling double vision cleared 80%. That’s 360 failures and one success! It’s taken years of trial and error to land on a balance, stretching, and strengthening routine that works for me. I stumble a lot, fall infrequently, and sustain only minor injuries when I do. I get frustrated when I see failure and stuck in the muck. Fail and try something else, that’s the ticket.

Failure flavors humility and empathy. My best stories are of failure – my failures. People laugh with me. We can all relate to failure. It’s the warp of our lives. Hearing about a failure, we naturally ask, and then? What happened next? What did you learn? What did you try? What eventually worked?

Since I stopped being an employee or a boss two years ago I’ve written annual reports for myself. I had written ones for my boss and staff for 25 years straight. I thought I’d keep it up now that I’m retired from that. Helps me be sure that my work serves my mission. With so much to do in this sick, sickness industry, it’s easy to feel disappointed and burned out. Fortunately, I’ve made a career of beating low expectations – starting with something truly disappointing and finding the small thing that can have an outsized impact by moving that something a lasting inch. I call them levers for best health. I’ve found that drinking water has the most outsized impact for best health. Anyway, the annual report helps me keep a pulse on the balance between impactful work and stoking my fires while managing my health and having fun. It’s an inspiring strange ride. Thanks for being on the ride with me. I couldn’t do it without the personal inspiration of my immediate family (Ann, Simon, Ruben, Jessica, Kate, Anica, Jacky, Leon, and Oscar) and my friends (Mary Sue, Sue, Michael, Kathy, Fatima, Regina, John, Geri, MaryAnne, and Pat). Read More

When I went to an inner city Nursing School in 1975, I was a 19-year old hippie white boy from the suburbs in a class of 150 mostly mid-aged African American women (one other guy). I felt like a fish out of water. When you’re admitted to the hospital you’re wearing a johnnie, pushing a button for help, and feeling like crap you’re surrounded by streams of people in uniforms who know each other and work together every day. A fish out of water. As a patient stakeholder/expert on a panel, I’m surrounded by scientists, physicians, administrators. A fish out of water.

Interesting idiom, fish out of water. I picture a fish flapping, breathless, on the deck of a boat or in a pail, ready to die. But really that’s way too drastic. It’s more, oh crap, what am I doing here? I don’t belong. I feel so small. I’m an extrovert (or ENFP for you Myers Briggs folk), so I wriggle out of that fish out of water feeling pretty quickly. Ever since my hippie drug days, I learned to bring safety with me whenever I did anything risky. My intro to Participatory Medicine was Take this Book to the Hospital with You by Charles Inlander and Ed Weiner. Create your own pond in the middle of dry dock in the fish out of water idiom. In Nursing School I set up a study group and held them at my classmates’ homes. I knew how to study and they knew how to cook. As a direct care nurse, I encouraged people to have a family member with them at all times. I build relationships with people on panels and soon I have a pond.

It’s harder when you’re not an extrovert. It takes pre-thought, planning, and encouragement from others. When I watch introverts manage successfully they know who they are, have confidence, and are clear that it’s their needs that should be met. And they take someone to the hospital with them.

Related Posts

The Journal of Participatory Medicine recently published an article I authored, Communication at Transitions: One Audacious Bite at a Time. During my 40+ years as a nurse, 30+ years as a caregiver, and many years with a chronic illness, I can think of nothing more common than transitions: hand-offs between team members occur many times a day and moving between settings (e.g., home to clinic, hospital to home) occur many times a year for anyone who’s sick. How can it be that our health system is so bad at transitions? It’s as if Mass Transit couldn’t manage transfers from bus to subway, airlines couldn’t transfer bags from one airline to another, or banks couldn’t transfer money from my bank to a store or my employer to my bank. Without transfers mass transit, airlines, banks couldn’t exist. I wrote this article with incredulous frustration. Here’s an overview of the article. Please read the article and let me know your thoughts. How can solving this communication issue become essential for the healthcare community?

The Journey

To be audacious and take significant steps toward achieving the Quadruple Aim (improving the patient experience of care; improving the health of populations; reducing the per capita cost of health care; and improving the work life of clinicians and staff), we patients and caregivers need to better understand key features of our health journeys. When on that health journey, we are patients interacting with a series of care teams: our home team (social network), our community agency teams, our emergency care team, our hospital teams, and on and on. These care teams include ourselves, our caregivers, clinicians, other professionals, and direct care and support staff—people at the center of care. The actions taken by people at the center of care to improve, maintain, or adapt to our health or illness represents our health care. Actions can be diagnostic, taking medications, undergoing procedures, learning, living life and getting help living life. So, our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us.

Transitions – What a Mess

During this journey, we transition from one setting to another, from one team to another, repeatedly. Communication knits this maze of actions, interactions, and transitions together. At its core communication is two or more people or parties sharing some information via some channel (voice, paper, digital, dramatic), one time or several times in a particular setting, hoping to accomplish something that moves us along in our health journey. One of the most persistent and ubiquitous frustrations in health care is that of poor communication. Poor communication at transitions is at the root of much overuse, underuse, and misuse of health resources, and results in the inability of patients to complete recommended treatment. For the patient and their family this means unnecessary delays in returning to health or worse. For those professionals on the care team the incidents of harm, burnout, stress, and frustration cause financial, emotional and career-ending consequences. Poor communication at transitions impacts each of the Quadruple Aims. Read More

I am the CEO (Chief Executive Officer, the boss) of my health team with a ton of subcontractors: my primary care doc and her practice, my neurologist and his practice, the radiology department at my local hospital, the neighborhood pharmacy, the utility companies… You get the idea. They get paid through my employment benefits, your and my taxes, and out of my pocket. Right now I directly employ my massage therapist and acupuncturist – fee-for-service. I also have pro bono team members: my wife (my care partner), my family, friends, and advisors.

As CEO of my health team, I try to lead and manage. Leading is building and fostering relationships, finding service providers as needed, setting health goals, coming up with a plan to meet my goals, and learning from our mistakes (what doesn’t work). As a leader I find ways to share information among the team, and, of course, I fundraise and cheerlead. Leading is also about succession planning. Who will lead when I can’t? Managing, on the other hand, is negotiating service agreements (contracts), actually seeing that the tasks in the plan happen as desired, maintaining the team and it’s connections, and trying to fix what isn’t working. It’s a tough system to lead and manage. It’s exhausting. I have some of the skills I need, but nowhere near all. There’s very little training for Health Team CEOs- no certificate or degree. The pay stinks. There’s no vacation. I can’t resign. Read More

Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.

I was nominated to sit on a CMS (Center for Medicare and Medicaid Services)/Battelle Quality Measurement Development Technical Advisory Panel (TEP). The TEP had its first meeting in Baltimore last week. I was one of 19 Panel members (and one of two with expertise in all four of the selection criteria -Consumer Perspective, Clinical Content, Performance Measurement, Coding and Informatics). The TEP seeks to improve the process of developing measures. It isn’t trying to develop measures. The good news is that the TEP gelled as a team and the CMS/Battelle leaders seem open to, if not eager for, actionable advice. I am honored to have been asked to sit at this table.

As a Patient Activist and a change catalyst, I appreciate the formidable forces of inertia and the current business realities of the medical care industrial complex. What can little Danny van Leeuwen hope to accomplish? My goal in accepting this appointment is to find one lever that can move the Value-Based Measurement battleship three degrees toward value to people at the center of care. My superpower is to accept what is and go from there. After listening to my esteemed TEP colleagues, my perception of what is is:

Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),

Inertia is heading to further measure specificity by specialty and diagnosis (not toward the patient with more non-medical than medical determinants of health who is more than a sum of their diagnoses),

Data for measurement exists primarily in claims, diagnostic systems, and Electronic Medical Records (much less patient-generated data and experience/perceptions of people at the center of care),

Physicians bristle at the idea of being held accountable for anything they deem out of their control (rather than what can I do to contribute to improving whatever?),

People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,

Few, if any, incentives exist for data vendors to integrate their data (So patients, caregivers, and parents using the most health care dollars provide the bulk of communication at transitions in care, if they can do it at all),

Testing measures in real-life seems to be an almost insurmountable challenge (so the link between measures and what they seek to measure and the link between measurement and value to patients is tenuous),

Direct care clinicians are stressed and burning out – the proportion of time they spent documenting rather than caring is growing while they feel pressure to increase productivity (rather than technology helping to reverse those trends),

According to GoodRx.com, azithromycin, prescribed for my pneumonia, has a cash price of $35 with a $10 copay cost to me. Took me 10 seconds to find this.

I’ve spent more than four hours and I still don’t know how much the rituximab, a chemotherapy infusion for my multiple sclerosis, costs or will cost me. I’m turning 65 next week and I need to select a Medicare Advantage Plan. I spoke with several insurance companies. None can (or will) tell me the cost of Rituximab to them or to me. They differ whether it’s a formulary drug (covered at all). They differ whether they consider it a drug covered under Medicare Part D (see below) or an infusion, covered under Medicare Part B. If Part B it may be included in my premium.

I read a post this week on the Society of Participatory Medicine’s blog about a nightmare attempt to obtain medical appointments as new patients. You’ve faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting, waiting, that the author describes.

I’ve dealt with it, too, as a patient, caregiver, clinician, and quality management leader. So, how do health care clinics and insurance companies know about the challenges their patients/customers live through? The most common is through surveys. Surveys are blunt (not sharp) and fairly useless. Most health plans require clinics to administer the CGAHPS Clinician and Group Survey. Three questions on the survey include:

Patient got appointment for urgent care as soon as needed

Patient got appointment for non-urgent care as soon as needed

Patient got answer to medical question the same day he/she contacted provider’s office

In the last 12 months, when you needed care right away, how often did you get care as soon as you needed?

In the last 12 months, how often did you get an appointment for a check-up or routine care at a doctor’s office or clinic as soon as you needed?

In the last 12 months, how often was it easy to get the care, tests, or treatment you needed?

See, not very informative. A score might be more than 80% of patients say Usually or Always? That could mean that 19 of 100 people responding are unhappy with their experience. Wow. How can anything be changed based on that result? Read More

Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate to solve local problems that matter to them. 50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample:Read More